NEWS- A Milestone for Haemosexual

The 2016 EHC Annual Conference is now officially closed. Many thanks to all speakers, moderators, delegates, volunteers and the Foreningen for blødere i Norge for making this event a success! We are already looking forward to our 2017 Conference in Vilnius! Wishing everyone a safe trip home!

I am travelling to the beautiful Norwegian city of Stavanger, to attend the European Haemophilia Consortium Annual Conference 2016. This is the first event I will be officially attending to represent Haemosexual. This could not come at a more poignant time, and timing is essential.

As Haemosexual becomes more established the same shared goals can be achieved equality, education and better healthcare for everyone with a bleeding disorder no matter what their sexual orientation is.

Alain Weill, WFH President gave a passionate speech at this year’s World Federation of Hemophilia Congress held in Orlando, back in July.

“We must eliminate the stigma associated with having a bleeding disorder and we should not accept anything else.”

Even in developed countries, it can feel like society is at odds with people with bleeding disorders and their families, Weill said. Factor costs can be prohibitive. Employment opportunities can be limited. In some countries, a person with a disability can’t get a bank loan. And in numerous countries, it’s not unusual for hemophilia patients to be denied services from fearful care providers.

Children with bleeding disorders continue to face discrimination, Weill said. In a significant amount of countries, when a child is diagnosed with a bleeding disorder, many families experience devastating hardships. In some cases, when a child with hemophilia reaches school age, some misguided teachers believe bleeding disorders are communicable and ban the child from their classroom. “Already having to deal with their clotting deficiency, many children find themselves confronted with anxiety, depression and isolation.”

Weill urged each member of the bleeding disorders community to also think locally when it comes to education. “As you go through the congress experience, gather the tools that you can take back to your own communities that can help to educate and make a difference,” he said.

“For when we educate people to see that being a patient of a rare bleeding disorder does not define who that individual is, and instead see them as an active member of society who enriches their community, we will show that it is indeed true that the highest result of education is tolerance.”

The European Haemophilia Consortium (EHC) is an international non-profit organisation that represents 45 national patients’ organisations of people with rare bleeding disorders from 27 Member States of the European Union (EU) and most Member States of the Council of Europe.

The EHC represents approximately 90,000 people diagnosed with a rare bleeding condition such as haemophilia, von Willebrand Disease (VWD) and other rare bleeding disorders across Europe. However, it is estimated that many more live with an undiagnosed rare bleeding disorder.

The EHC actively supports its National Member Organisations (NMOs) at national and European levels, and also helps NMOs to engage with each other, with the objectives of:

Improving quality of life of people living with rare bleeding disorders,

Understanding the status of haemophilia care in member countries through regular surveys,

Stimulating research in all fields related to haemophilia and related rare bleeding disorders.

The EHC draws on the knowledge of patients, healthcare professionals, the scientific community, the European institutions and the pharmaceutical industry to share expertise within Europe. The EHC also collaborates closely with other European patient organisations to ensure a strong collective voice for people with rare bleeding disorders.

“Time” they say “waits for no man”. So, whilst the seasons change and we have dark cold nights to look forward to, spring has sprung across the southern hemisphere. With the help of a very dear friend, we hope to bring you some rays of sunshine to brighten the most darkest of nights. I am truly honoured to announce […]